You know that I am avidly watching ‘The A Word’ , well I continued to enjoy it last night as the story of the family coming to terms with Joe’s autism progresses. Last night, his mum briefly saw a glimpse of what her son might be like without autism; she was thrilled when he showed empathy while he was feverish, he recognised her sadness when she was looking at a photograph of her mother and they shared some memories of when he was younger. She was so happy that she had these shared lucid moments and she excitedly told her husband that he had turned a corner and was getting better. The next morning however, her autistic son returned, he refused to look at the photo abum with her again and his autistic behaviour was back. She was devastated and then her sister in law explained that ‘the fever effect’ was a documented phenomenen, when a high temperature could temporarily prevent the more extreme behaviour.
This mum had a brief insight into what her son might be like without his disability and she dared to hope that his autism was going away. We too have had that experience with epilepsy, when the seizures last year disappeared for 35 days, we began to hope that Joshua’s brian surgery had been totally successful and that at last his epilepsy had been ‘cured’. We had a glimpse of what life without epilepsy could be like and rather than assuming Joshua would have another seizure, we began to dream again that he he might not suffer again and that we could get our boy back – the cheeky son who is not falling asleep all the time.
But then hope is cruel too as it shows you the potential prize and then snatches it away again – rather like on the old darts quiz show ‘Bullseye’ when the failed finalists are teased with the speedboat and the famous words ‘Lets see what you could have won’. You start to imagine different scenarios for your future and then that hope is dashed as ‘normal’ life resumes, only somehow now it seems harder to bear than before that peep at an alternative future.It does feel rather like a cruel tease.
But I tried to regard the brief period of ‘respite from symptoms’ as an indication of what could be possible again and what life could be like. So now my expectations are higher than they were : immediately after surgery, we were dreaming of Joshua being seizure-free, but then it became clear that he would still have some seizures and they settled to a pattern of a cluster every 10-11 days. Last December the bar was raised to 35 days between seizures and that is where it has stayed as his record, a record that I am still hoping he will thrash one day. So rather than being a killer, hope can be actually what keeps us going, hope encourages us to keep on fighting as we get a glimpse of the special prize.